The Opportunity
Children are not supposed to die, yet sadly even with advancements in care, some will. Less than 1% of all children are suffering from complex medical conditions, and therefore this special population regularly gets missed from healthcare priority discussions.
For families devastated by this reality, their journey is often brutal. Parents are typically thrust onto this path with no preparation and then struggle to find guidance and support within their communities. Depending on where they live, available resources may be non-existent, patchy, or inadequate to meet their child and family needs.
Imagine a community having all the necessary providers capable of coming alongside families the moment they discover their child is not expected to live into adulthood, often at diagnosis or even earlier at a “moment of concern”. Unfortunately, we are far from that reality. No single provider can do it all, it requires an all-inclusive coordinated care approach by an entire community working together.
Expanding and strengthening the network of competent providers able to reach further will fill the gaps in coverage families endure today. This will occur when barriers are eliminated for licensing options that align with sufficient and appropriate reimbursement compensation methods. As these solutions emerge, more passionate people eager to pursue their hearts calling will become involved.
Despite being 1/5 the size of the U.S., the U.K. is recognized as a global leader in pediatric palliative and hospice care. Twenty years ago, about 42 Homes existed in the U.K.; now, the number is 54. Adjusting for population and size, the equivalent number of U.S. Homes would be 266—yet there are only four.
The existing four; “GeorgeMark Children’s House” (opened 2004), “Ryan House” (opened 2010), and “Crescent Cove” (opened 2018), and for respite only "A Rosie Place for Children" (opened 2011) have served over 10,000 families cumulatively. Fortunately, the Home concept is appearing on the U.S.’s radar screen, and will now have a collective voice. Few people have heard of Homes, less than a handful of communities have them, and the initial swell has been hard to create.
Medicaid is the primary source of funding care for children with medical complexities but can be a complicated system to navigate. Slim Federal guidelines currently exist to address this population, exacerbated by an extreme variety of State level policies for those seeking answers. Well-intended, this creates a hodge-podge of State Medicaid community-based waivers (1915), and demonstration programs (1115) attempting to address the local crisis.
Each of these can be bureaucratically cumbersome to enact and renew every three to five years. Primary insurance carriers typically address medically necessary areas of a child’s care, within limitations. A holistic approach to recognizing the full care needs of the child and family is needed, with appropriate payment methods to assure the sustainability of a capable provider network.
